HAWMC Day 28: H.E.A.L.T.H

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Tuesday 28th April: H.E.A.L.T.H 

Use ‘health’ as an acronym and come up with words that represent your Health Activist journey.

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H is for HOPE

As I have written in earlier posts, hope is a vital ingredient for life with a chronic illness.  Hope acts as a survival mechanism for when we are at our lowest ebb.  It is what motivates us to overcome the obstacles blocking our path, to push forward and carry on living.  Hope is the line between creating and maintaining a happy and meaningful life despite chronic illness or being consumed by the negativity that illness can create.  Hope allows us to have something look forward to when it seems our future looks bleak.

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E is for EDUCATING

The aspect I love is the reciprocal nature of being a ‘health activist’.  As much as my blog and my writing as well as my presence on social media helps to educate and inform others of neurological conditions such as the brain stem lesion I live with or the impact of chronic illness in general, I also enjoy learning of other chronic conditions and the impact that these creates in the lives of the individuals living with them.  I have learnt so much about other chronic illnesses from reading various blogs that I love reading and by getting to know others on social media; in fact, I have even been known to diagnose patients on certain medical dramas from what I have learnt from other bloggers and health activists!

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A is for AWARENESS

An important part of living with a long-term health condition is self-management.  Therefore, to be able to implement a self-management programme it is important to be aware of every aspect of your particular chronic condition.  We need to be aware of potential triggers that can induce symptoms, so we can stay away from them as much as possible and not exacerbate the condition.  It is important to also be aware of anything that eases symptoms for when they do occur.  It is about making positive conscious decisions to help ease symptoms as much as possible and to improve quality of life.

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L is for LISTENING

It is so important to listen to our bodies.  Your body knows what it is capable of, and so we need to be listen to them, especially if your condition is one which tends to fluctuate.  In order to be as well as possible we need to be aware of any changes in symptoms and act accordingly.  An example, and one which I have done a lot lately, after listening more to my body, is taking a rest when needed.

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T is for TWITTER

I have come to absolutely love Twitter and use it a lot to communicate and connect with other health advocates, bloggers and spoonies in general.  As well as using it as a tool to promote my blog and the writing I do as a result, but I have also built a lovely support network with others who or have had experiences with chronic illness.  It is a great tool to use as a way of sustaining a role in health activism, by tweeting information, links and sharing other blogs regarding the condition being represented.

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H is for Hobbies

Living with a chronic illness, it seems can often take over our entire lives.  It really does, everyday symptoms dictate to us how our day is going, what we can and cannot do, and so on. It can make us feel that sometimes we have no control over our own lives.  It is important therefore to have a life outside of illness.   One way to do that is to find hobbies and interests away from illness.   It is great to have hobbies as away of distracting oneself from debilitating symptoms and helps alleviate the effect of them on our lives.  Don’t let what you can can’t do interfere from doing what you can do!

My life and health in a ‘Word Cloud’

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Word Cloud…Make a word cloud or tree with list of words that come to mind  when you think about your blog, health, or interests.  Use a thesaurus to make the branches of your “tree” extended further.

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This is the Word Cloud that I have created.  It contains words that are related to my condition, the challenges and problems that the condition has placed upon my life, and other words that relates to health and living with a chronic illness.  It also contains words that have helped me through my darkest days living with a neurological condition – the social media platforms and the people that have supported me, the friends I have made along the way.

Keep Calm…and Stay Positive

As most of you know, that due to the unknown cause of my neurological condition is starting to get me down.  It is frustrating and disheartening when the doctors are unable to give you the answers that you so desperately crave.  It is simple – being undiagnosed is dejecting and can causes psychological symptoms such as depression.  All we crave is a diagnosis – a name for the cause of all that we go through on a daily basis.  A name that confirms that we are not crazy or that the symptoms are all in our head.

Due to the weakness in my legs as well as the severe dizziness and fatigue that I experience due to my undiagnosed condition, I am often unable to get out of my bed and so confined to my bed for days at a time.  Staring at the same four walls of my bedroom; a place where I spend a lot of my time anyway is not a positive experience.  It is often a painful reminder of my predicament; a predicament that I am an undiagnosed chronically ill patient.  Being confined to my bed, leads to feeling of loneliness and isolation – how many times when experiencing severe symptoms have thought you were the only person to be going through this experience?  Is that a yes I hear?  Me too.

However, Voltaire once stated “I have chosen to be happy because it is good for my health”.  A truly inspirational quote, and one that is supported by research – there is a lot of evidence that suggests that being positive makes you feel less stressed; has a positive influence on your immune system and has a huge influence on your overall well-being.

But how can we still remain positive when living with a chronic illness, which has such a negative influence on all areas of our lives?

Well, for me I have started to assemble a ‘positivity board’.  A board with cards, postcards, or letters that are both positive and in turn makes me feel more positive and happy despite being bed-bound or dealing with unpleasant.

The board is no way finished but at the moment includes a couple of cards that I found in a local art gallery that includes positive quotes, for example “Life is not measured by the number of breaths we take; but the number of moments that take our breath away” and my personal favourite “Life is not about waiting for the storm to pass but learning to dance in the rain.”  Also, on my board is a gorgeous card that was sent to me by a dear friend which has some really lovely words both outside and inside the card which I shall treasure and which brightened my day when I received it – a time when I really needed it.

I also found a couple of butterfly clips which I found in a local shop which I bought just to brighten the board and because of my love of butterflies.

Try making a board for yourself and fill it with all the things that make you happy or makes you feel a little more positive despite whatever circumstances that you often find it hard to cope with, or one which has a negative impact on your life.

Stay Calm…and make a positivity board!

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If you come across any cards that has any positive quotes or perhaps with a lovely picture of a butterfly or sunflower or anything else positive, let me know in the comments section and help fill my positivity board!

 

Thanks everyone! xx

HAWMC 2013 Day 1: What Got Me Started on The Blogging Journey…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The first prompt reads as follows:

Why you write – tell us a little about why you write about your health online and what got you started.

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Well, I got started writing about my health condition online on this very blog just over a year ago.  For years, before I got my definitive diagnosis, I was for years banded around the healthcare system visiting various consultants in different specialities, hearing the “it’s all in your head” diagnosis again and again.  Throughout this time, I felt scared, alone, isolated and so on.  The loneliness and isolation I felt was extreme – I felt as though I was the only one that was going through the pain of misdiagnosis and all of the symptoms that I have had for so long they were like old friends.

And so after my diagnosis, and joining various support groups; I felt it was time to start a blog – a place in which I can share my story and let other know that they are not alone.  Perhaps also hope – hope that one day they will too find that diagnosis that they have long been searching for.  It was actually a close friend, someone who also write her own fantastic blog, whom I met in a support group in which I am a member of who first suggested that I start the blog; encouraging me to share my story with others.  I had already regularly wrote in a journal, and felt a public blog was a natural progression for my writing as well as raising the profile for neurological conditions, which still seems to be under-discussed and not really publicised the same way as other conditions.

My condition is also unusual.  It is so unusual, that I have yet to meet anyone who has been diagnosed with the same condition, and so by writing the blog, I can maybe one day meet others with the same diagnosis.  However, this is not so important as I have not learnt that it is not the diagnosis that connects us but instead the experience of living with chronic illness.  There are many facets within chronic illness that are a part of the majority of chronic conditions such as fatigue, depression, pain and so on.

Apart from keeping the blog up to date, I also regularly take part in the ‘Health Activist’ Chat (#HAChat) on Twitter, in which myself and other health activists discuss various topics relating to healthcare and health activism.  I have also written articles for the ‘Invisible Illness Awareness Week‘ and a forum called ‘Disability Sanctuary‘.  In addition, the blog has enabled me to initiate contact with others with brain lesions, a couple of whom also has lesions on their brain stem like me, and this would just not be possible without the blog.

This year sees me getting involved with the ‘Health Activist Writer’s Month Challenge’ for the second year.  I get involved not only for the challenge for writing for an entire month continuously, but in my opinion the original prompts also challenge me as a writer and blogger – making you think deeply about the conditions in which we live with and writing them in a way in which we wouldn’t normally discuss them.  In addition, the HAWMC also allows us all the opportunity to connect with other health bloggers and read more about their journeys with chronic illness.  I have had the wonderful opportunity to meet many other health activists and bloggers through WEGO Health and the HAWMC.

And there you have it – how I started with how I started blogging about my health condition!

Living with illness…is like using a revolving door…

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Hello to all readers new and old

Sorry that I have not been able to write a post sooner but life has been pretty hectic!  Lately, fatigue has been a constant feature in my life, so much so, that the hours that I have with my personal assistant has been extended over two days instead of using all the designated hours in the one day.  Added to that, is a new group that I have recently joined as well possibly being involved with setting up a brand new group for young people with disabilities in my local area.

And then of course, has been my health.  As most of you reading this, also living with chronic illness, will know, that life can be like a revolving door – symptoms can be stable and manageable and then out of the blue, there is a deterioration of said symptoms and then find yourself navigating said revolving doors through to yet more doctors visits, hospital visits, more tests and so on.  New symptoms appear, an example being the recent introduction of vision loss can be worrisome and can also question whether doctors have given the correct diagnosis, or whether it is possible that your condition is deteriorating.  New symptoms are like being handed pieces of an uncompleted jigsaw puzzle and then having to cipher where these pieces fit in the bigger picture of your condition.

And after the initial consultation with your G.P can often, particularly if the new symptoms are unusual or worrisome, result in (again!) being referred to the specialty that is connected with the particular health condition.  For me, not only have I referred back to Neurology, but am also awaiting for an appointment to seen an ophthalmologist.  Waiting for hospital appointments, not only can be long and tiresome, but also leaves you on tenterhooks; especially when the mail arrives each day, wondering whether today is the day in which that all important appointment letter will arrive!

 

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That only then leaves the preparation for the actual appointment!  If I can offer any advice to any ‘spoonies’ out there, it would be this:

  • Make sure that you prepare for the appointment beforehand – if like, me you often find yourself remembering various information that you wished to discuss with your doctor AFTER the actual appointment, then it can be a really good idea to write a list of questions and points that you wish to discuss before your appointment.
  • You might wish to write down all the symptoms that you have experienced, I know from personal experience that I often forget to mention some of the symptoms that I have been experiencing
  • It can be quite unnerving attending hospitals; the often produce anxiety and fear, and often will forget some of the information that the doctor has given you, so it may be a good idea to ask a friend or family member to attend the appointment
  • Take a book, or something else to distract yourself from the anxiety, or even just to occupy the long wait in the waiting room

Any other tips that anyone has regarding attending hospital appointments?  Comment below and share them!!

 

A Look Back at 2012…

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Hello to you all, I hope your Christmas and New Year went well, and you all managed to enjoy yourselves.  Now 2013 is upon us, I thought it would be a good idea to take a look at last year…

Well, firstly 2012 saw the deterioration in my condition and the symptoms which affect me: the dizziness became much more intense as well as becoming constant.  As well as this, the weakness in my legs became worse, and thus saw me needing to start using a wheelchair, as the weakness left me with an inability to stand for shorter periods of time.

However, although last year, saw a deterioration in my symptoms there was still a lot to be thankful, including the following:

  • The creation of the blog; gaining a lot of new friends and contacts within the world of chronic illness 
  • Taking part in the wonderful 12-12-12 Project hosted by the wonderful Marissa over at abledis.com 
  • Having two articles published online; one for ‘Invisible Illness Week

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  • Joining the wonderful group ‘Life 4 Living’ in which I became the group’s secretary; giving me a sense of pride and purpose 
  • Can’t forget the two nominations I received for the blog as part of the WEGO Health Activist Awards!!  Thank you for whomever nominated me and the blog
  • Receiving help from Social Services to help me manage the condition, as well as being able to employ a personal assistant to help me get out of the house more!

I just wanted the opportunity to show people that although many of us, battle everyday with chronic illness, it does not mean that our lives need to be full of negativity and despair, but instead there are many positives that can be as a result of said illness.  I recently bought myself a gorgeous print from a local artist, which sums this up beautifully:

 

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The quote says: “Just when the caterpillar thought the world was over…it became a butterfly”

NHBPM Day Twenty-Four: Being there for someone with a Chronic Illness…

Welcome everyone to Day 24 of the WEGO Health annual ‘National Health Blog Post Month’.  Today, instead of writing one of the prompts provided, I would instead write a follow-up piece to the Day 18 Post ‘How should I care for someone with your condition?  Well you should…

What if your friend suffers with a chronic illness?  What type of things could be done to help them?  For friends, it can be harder for them to fully understand the condition on which someone lives with, especially as the friend does not see them everyday, and therefore may not see the full extent of how the condition affects their friend.

Living with a chronic illness can be challenging and frustrating for everyone involved.  The symptoms often fluctuate, for me they can fluctuate frequently; symptoms which can change instantly.  Symptoms can also be unpredictable – never knowing which days are going to be bad and which days will be good; often patients do not know how they will feel one minute to the next.  This can make plans for going out incredibly difficult and challenging.

With a condition like mine, it can also be challenging to know how well I can function from one day to the next; or one minute to the next.  One minute my mobility can be relatively okay, using my crutch and then  the next I can be on the floor after my legs have given way.  This obviously can make incredibly challenging to go out, and often plans need to be made to cover all eventualities.

So, how can you help a friend who suffers with a chronic illness?

Well for starters, to be a friend of someone with a chronic illness, in my opinion you should be non-judgemental and understanding.  It can help if the person educates themselves on their friend’s condition.  To learn how the condition can fluctuate and change, and all of the symptoms which can come with the condition.  With my condition, it can affect mobility, vision, cognition, and also constant dizziness and episodes of vertigo.

It can also be helpful for the friend to learn the changing needs of the patient and never make assumptions of their capabilities of the person.  Often, the person may look really good, but the reality may be the complete the opposite.  So, always, ask the person what mobility aids that they think they may need for the trip out somewhere and also to ask them if there is anything that you can do to help them.

The biggest think that I feel that you can do to help your friend whom suffers with a chronic illness is to take them out on outings for a few hours.  The biggest challenge that I often face is socialising.  Due to my condition, I am unable to drive, and due to the severity of the symptoms and the problems with my mobility, I can not go out alone.  I am unable to cope with public transportation such as buses, as it requires a lot of standing around waiting for its arrival, which as my legs are weak, I just cannot do.  These limitations have severely affected my friendships.

I could invite friends to visit me at my home; but often feels that I am inconveniencing them due to the travelling that they would have to do to reach my house.   Also, when I am having company; I like to make sure the house is clean and tidy for them, so all the preparation that I would have to do, really would deplete the number of spoons for that day, and by the time that they arrive I may feel so tired that I am really not up to socialising or playing hostess to the guest.

When I am invited to spend time with friends ( although I really only have one friend who is able to physically take me out) it really cheers me up,; makes me so happy to see someone I haven’t been able to spend the time with, that I would like.  It is really useful for the patient when being invited out within the wider world for a few hours; for me, a lot of my time is spent inside the house, so anytime that I do get to go out for a few hours is special.

If the person has a chronic illness has, like myself have difficulties with their mobility, then for the friend it is important to consider transportation – if a group of friends, for example, is meeting for a meal, then it is important to include the person with the chronic illness, and to check whether they have means of getting to the venue, and if not then help them with the planning for transportation that will be suitable for the person.  If you are able to drive, then volunteer to pick them up and drop them at home afterwards.

When friends go to these efforts to be inclusive and help us with chronic illnesses, it can make us feel valued as a friend and just makes us feel special, and are always so appreciative of any help that friends offer.  Life with a chronic illness can often be very lonely and isolating, so knowing that friends are there for us, and are willing to go the extra mile to help us with things like going out, and helping with transportation can be so uplifting – and reminds us that we are not alone, and that although it may  not always feel like, we have friends out there who care :)

Although, friends should be made aware, that there is always that possibility that we may need to cancel plans at the very last-minute due to the unpredictable nature of chronic illnesses.  This can be very frustrating, and know how upsetting it can be when plans are cancelled.  It is also extremely disappointing for the patient too as when plans are made, we often really look forward to go out and have fun, and to then being unable to function and need to stay at home can be demoralising as we spend so much of our time at home anyway!  So, friend always be understanding when plans have to be cancelled and to never blame the person – it’s not their fault but their condition!  If blame is directed towards the chronically ill person that it can often make us feel even worse.

Another big tip that I can give is to keep in regular touch with the person.  Send a message, whether it be a text, message via social media.  Just to let them know that you are there for them and more importantly that you care.  Often, I find myself totally alone, and the loneliness feels even more evident, so it;s really lovely when I do receive messages.  It makes me feel connected to the world and to others even though at the time it may not feel like it.

So, those would be my tops tips for friends of the chronically ill?  Are there any tips that I have missed out?  Let me know….